Happy Birthday, Dad

Posted July 9, 2012 by LeftCoastDad2Two
Categories: Uncategorized

Tags: , , ,

Hi, Dad. Today is your 77th birthday.

And after that, I have no idea what to say, and for that I feel guilt. Our family is in the process of adjusting to the addition of a new, uninvited and, so far, unappreciated member of the family, named “dementia.” Months ago I took solace in labeling it “early onset,” unconsciously feeling that I could keep it at bay and somehow control its pace of intrusion into our everyday lives. (Note to self: “You’re just not that powerful. Get over it.”)

I am thankful that we have another day together. You remembered our names today, and the names of your grandchildren, and I know that makes you feel good. But no, just like yesterday, and the day before that, you still cannot drive your car, and you need to have one of us go with you if you go for a walk. It is a safety issue both for you and for the other unsuspecting residents of our quiet little town. And yes, I know we will have this conversation again this afternoon, this evening, and tomorrow morning – although it may need to be with my wife, or with mom, because none of us can consistently withstand your anger and frustration yet remain compassionate. We promise to keep trying. You don’t need to take your car in to the shop for work, and, more importantly, you don’t need to pick it up. It is parked in the carport outside the back door, just as it has always been. I did not have it impounded, and you don’t need to speak with anyone at “that outfit” to restore your driving privileges.

Just as we’ve discussed every morning for the last month, we need you to un-pack your clothes and put them back in the dressers and closets, because this is your house. This is where you and mom have lived for 43 years. There is no other “home” to go back to, and, as you blow out the candles on your cake, I silently wish for the words to help you comprehend that this is your home – to somehow cut through the fog and anxiety that are clouding your acceptance and understanding. This is where you raised your children – your daughter and me. The neighborhood barbecues, the base to which we returned from all the school functions, the ballet recitals, the Little League games you coached, the high school games of football and baseball. This is the home you came back to after we all gathered for an incredible week of fun at Disneyland last year to celebrate you and mom being married for 50 years.

I know your world is getting smaller. But we’re trying to help. We’re all on your side, committed to supporting you (and each other) through this.

Then again, this afternoon, after discussing that we would walk to REI together, you snuck out the back door, to prove to us that you don’t agree with the new life rules and have no intention of respecting them. That was an hour ago, and I don’t have the grace to drive around looking for you. I hope you’re not trying to buy Red Bull (that your doctors and family have expressly prohibited), which you have typically done when unsupervised. Or that you are not roaming parking lots, as you’ve done before, trying car doors, looking for one that’s unlocked so that you can drive it (nevermind that the padlock key you carry will neither fit nor activate the ignition).

Yes, I’m angry, and I tell myself that I’m angry at the dementia. But it’s my father that is telling us over and over again that his family does not matter, is less important than his “right” to drive and does not deserve to know where you go when you disappear. And I’m having a very hard time separating the symptoms of dementia from the behavior of my father right now. And it sucks.

Happy Birthday. I wish.

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Our Twelve Days of Christmas

Posted December 20, 2011 by LeftCoastDad2Two
Categories: Autism, Down syndrome, Parenting

Tags: , , , , ,

Growing up, I always wondered about “The Twelve Days of Christmas.” Other than a raucous carol to be sung enthusiastically along with Mitch Miller, the point was lost on me. When I was young, our family routine was for me to wake up at 5am, bolt (very, very quietly) to the living room, scope the mass of boxes wrapped around the tree, sneak back to bed, twitch for 5 minutes, then go wake up my sister and parents to start the mayhem. By 9am, all the packages were opened, partially played with, and the round of phone calls to distant relatives begun. By 7pm, dinner and dishes were done, the house cleaned and we were exhausted. And that was the end of Christmas. On to the next. That is not an indictment of my parents, it is what we did. All of us in my neighborhood, all my friends and their families.

This routine (without the trip into my parents’ room) continued through my early adulthood, and I carried it with me into married life. My wife and I actually slowed it down a bit, as we were always geographically separated from family, so we would start later, but inevitably, by 7 or 8pm, we were finished.

Then we had children. I was anticipating going back to the old routine. Relishing it, in fact. It didn’t quite work that way.

As they both became mobile in the toddler years, things were different.

Our son, who has Down syndrome, does NOT like change. So much so, in fact, that he refused to go into the living room because we had placed a TREE in it! Over the years, he has worked his way up to accepting the decor. I wouldn’t say embracing it, but accepting it. Also, he has never, to this day, been a big fan of wrapped presents. Developmentally, it just isn’t a big deal. It is a colored box. Big deal. And usually, there is one gift that he loves most. And he is content to play with it for several minutes, then retire to a quiet place and chill out. There is no reason to mess with any other colored boxes. So there has never been a high level of Christmas excitement for him.

Our daughter was the polar opposite. She would be up at the crack of dawn (her usual rising time), and tear down to the tree. She would unwrap as much as we would allow, as fast as she could, and about half way through, would completely melt down. We’d take a break of a few hours, and resume. As she got older, the break needed to last longer. At first, we struggled to understand what was happening. We knew some of it was wrapped up in sensory processing disorder, and eventually would embrace it through a diagnosis of Autism (Aspergers syndrome) and several accompanying diagnoses.

Around the time the kids were 6 and 5, respectively, it dawned on us. There was no set rule that said everything needed to be done by a certain time, or even a certain date, for that matter. We had always taught the importance of Advent, and we built on that. And we also came to grips with our own version of The Twelve Days of Christmas. Our kids would open a couple of items whenever we were all gathered in the living room, then save the rest for later. The days stretched, and so did our celebration of the season. It took the pressure off the kids, and allowed us to help them fully enjoy the season.

It did make for some awkward phone calls in the early years from relatives wanting to know the kids’ reactions to their cool gifts. But after explaining what we were doing, most understood, and waited for the day theirs was opened. And the puzzled look on my daughter’s friends’ faces is priceless when they see wrapped presents still under the tree several days after Christmas.

Recently, I felt validated when a theological scholar (and amazing songwriter), Glenn Packiam, wrote that, “Part of reclaiming a calendar centered on Christ means learning to let Advent be Advent – to prayerfully long for Christ’s coming and be attentive to the ways He is coming to us even now by the Spirit…and then let Christmas be Christmas – a burst of joyful celebration that goes on for 12 days!”

I’m not sure we’ve pulled off the entire 12 days, but we’ve pushed it through the beginning of the new year. And it’s a great reminder for us to start the year with a spirit of joy and gratitude. As I’ve told friends over the years, our Christmas celebrations look nothing like a Norman Rockwell painting. Some days it more resembles a Picasso, and others, a Monet. But they are beautiful, they are unique, and they are treasured. Just like my family.

Merry Christmas!

It’s Your Paradigm That Counts.

Posted October 12, 2011 by LeftCoastDad2Two
Categories: Down syndrome, LA Down Syndrome, National Down Syndrome Awareness Month, Parenting, Uncategorized

Tags: , ,

October is national Down syndrome awareness month. My son with the extra 21st chomosome taught me about the word “paradigm.” My son with special needs. The one with global developmental delays. The non-verbal one. The one who’s IQ is labeled by psychologists as “not testable.”  The one called “oblivious” by his kindergarten teacher – taught me something that had never been within a stone’s throw of being included in my vernacular or lifestyle.

My Webster’s dictionary (yes, I’m ‘old school’) defines the word “paradigm” as “an outstandingly clear or typical example.” Dictionary.com defines it as “an example serving as a model or pattern.”

It tears me up to admit this, but when Hayden was born, I had called my parents to share the good news. During the conversation, I told my dad, among other things, that his first grandson would never pitch for the Yankees or play linebacker for the Trojans at USC. I was focused on the label of Down syndrome. I thought the easiest way for me to learn about Down syndrome (in order to teach our family and friends about Hayden) was to compare and contrast to “typical.” And that’s what I did. I was so wrong.

Until at 4 weeks of age, when Hayden underwent a PDA ligation, or heart surgery to us liberal arts majors. Hayden was braver than I was, and certainly tougher than anyone I’d ever met during his recovery. His perseverence was breathtaking. And he came through with shining colors. I began to see my son. He was Hayden.

He wasn’t defined by a label. He was so much more. At some point, we left behind the extra chromosome, and dealt with the reality of Hayden’s daily routine. It was what it was. Just as we all are, he is who he is.

Around that time, we learned the life-changing philosophy. From Hayden. Not a life coach or late-night pitch man. His life, and ours, is defined to those around us by our life view. And we had a choice.

Strengths-based vs. Deficit-based

We soon found that Hayden (and by extension, our family, each member of it, and, indeed, our whole life) could be described in one of two ways. Only two. It’s pretty simple. Strengths-based, or deficit-based. 

Because Hayden is largely non-verbal, it is left primarily to us (his parents) to describe him, his interests and activities. Early on, we did so to Community Centered Boards, doctors, therapists, family members and friends. We found that Hayden can be described in terms of things he cannot do (deficit-based), or his life can be described in terms of things he can do (strengths-based).

We found that embracing the strengths-based view made us feel as if we were being more true to Hayden. This was the kid who was fighting with grace and courage through surgeries, seizures, infections and every other medical malady one can imagine. He was loving and trusting his novice parents to make the correct decisions on his behalf. It was the least we could do to return the favor.

So let’s try that first paragraph again.

October is national Down syndrome awareness month. My son, Hayden, taught me about the word “paradigm.” My son with the great sense of humor. The one that loves music. The one that uses sign language, and loves to watch Signing Time. The one that loves to go to the beach to admire the ocean as it sparkles under the sun – taught me something that had never been within a stone’s throw of being included in my vernacular or lifestyle. He taught me to be positive.

Celebrating Becoming An Expert

Posted October 7, 2011 by LeftCoastDad2Two
Categories: Down syndrome, LA Down Syndrome, National Down Syndrome Awareness Month, Parenting

Tags: , , ,

October is National Down Syndrome Awareness month. My name is Jeff, and like my wife, I am an expert on “Hayden.” It wasn’t always this way.

Hayden was born 13 years ago, with an extra 21st chomosome thrown into the mix, leading the medical professionals to conclude he had “Down syndrome.” As parents, we knew nothing of parenting a child with special needs. Truthfully? As parents, we knew next-to-nothing about parenting anything. (We thought the West Highland White Terriers were prepping us for a baby, but found out the reality fairly soon. They were just taking us for a ride.) My children still believe I know nothing about parenting, but that is for a later date.

We were, however, resourceful. We would learn. Quickly. And my wife is a “connector”. Before we brought him home from the hospital, my wife had already forged a relationship with a mom of a twenty-something year old man with DS. This mom also happened to be one of the pioneers in the special needs community within the state in which we were living at the time. A beautiful mentoring relationship was born.

In addition to all of the typical baby “stuff” one comes home with from the hospital, Hayden came with his own posse. What newborn comes with his own posse? H was putting the “special” in “special needs” from Day One. We had the pediatrician, the cardiologist, the respiratory therapist and home health care nurse (that I can remember off the top of my head). He was discharged on oxygen, so our house had a centrally-located base oxygen unit, and literally hundreds of feet of tubing throughout so that we could access the whole house  and he would be connected at all times. It looked like a movie set.

We found the nurturing part was a breeze. H is a complete love. In addition to his heart condition, he was born profoundly deaf. His idea of quality baby-parent time was swaddled in our arms, sitting on a couch, gazing deeply into our eyes. That was right up my alley. Give me a couch, don’t ask me to talk and I’m in heaven. I could do this.

The medical part? Neither of us are what you would call “scientifically inclined.” Both my wife and I are liberal arts majors. In school I had an aversion to anything ending in “-ology” or “-istry.” However, we now had the little dude with his posse counting on us. We were determined to do it right. We’d do the “journalist thing”. Ask questions, research, ask more questions, more research, then put it all together. And we did. We gave all our friends and family members a book about babies with Down syndrome. Then we tore into internet research regarding infant cardiology and hearing loss. We devoured everything we could. Our tests were pretty cool – the specialists would launch into jargon-laced explanations, and we could follow along, and even ask intelligent questions. We were able to accept the PDA ligation at 4 weeks of age, because we understood where the cardiologist was coming from, and we understood the testing that went into it. (It is important to separate “understanding” and “being cool with it.” It was amazingly hard to give your 4-week-old dude over to the ER staff for heart surgery. But it worked, and the boy no longer needed oxygen.)

This process of questioning and research became our life. It allowed us to catch an Ear, Nose & Throat specialist in a bald-faced lie, and kept us deeply involved and relatively sane during a debilitating bout with infantile spasms, invasive treatment for major systemic infections and multiple reconstructive surgeries on his ear canals and mastoids in order to eradicate infection.

My wife’s mentor taught us early on that we would have to be the experts on “Hayden.” Our kids are unique, and deserve individual advocacy in each situation of life. We embraced that process, locked in to “Hayden Radio”, and have tried to never waver from the litmus test of “What is best for Hayden?”

As we were becoming experts in all of the medical fields early in his life, we were prepping for the on-coming confrontations with Community Centered Boards, school districts, and other professionals in his life. When we were told infants with DS do not need speech therapy, we cried foul. When we were told special ed ran on a different calendar than the regular elementary school, we cried foul. Our convictions have served Hayden well. Not that we always prevail, but at the end of the day, we can look at each other and know that we did everything we could as parents. And some days, that is the best you can hope for.

Happy Hayden Awareness Month.

Celebrating The Need To Get Involved

Posted October 6, 2011 by LeftCoastDad2Two
Categories: Asperger's Syndrome, Autism, Autism Awareness, Down syndrome, LA Down Syndrome, National Down Syndrome Awareness Month, Parenting

Tags: , , , , ,

October is national Down syndrome awareness month. A lot of hard work by some seriously talented and highly motivated parents, advocates and self-advocates has come together in various national programs and campaigns to elevate awareness and acceptance of people with Trisomy 21.

I’m grateful for their efforts. Just as I’m grateful to all of the families that have gone before us, educating family members and friends – then passing information and hope to new parents behind them. The mentoring that goes on in the disability community is something to behold.

For families of kids with Down syndrome, every day is Down syndrome awareness day. The extra chomosome touches every facet of our life with Hayden, my dude-cool 13 year-old son. From waking in the morning to bedtime at night, there are accommodations – as well as expectations. It’s our life. As such, every day in our house is Hayden appreciaton day.

Similarly, every day in our house is also Autism awareness day, as our daughter, DP, is on the spectrum. And yes, every day is DP appreciation day. So you can see, we’ve got some major celebrating going on, what with all the awareness and stuff going on. Seriously, we’re fairly well plugged in, and would walk on fire, water, or any combination of the two for our children. But like most parents, I celebrate some moments more than others.

This afternoon I ran a quick errand into our local natural foods market. As I was fondling the 49-cent avocados (my sole reason for stopping in), I heard an announcement over the P.A. system. “We have a donation at register six!” This was soon followed by, “We just got a donation of $20 on register three!” These announcements continued as I gathered the produce and stood in line at check out. As I was paying, the checker asked if I’d like to make a donation for “autism” today. I said, “No, thanks” and was on my way.

As I was dodging puddles in the parking lot on my trek back to the car, something just didn’t feel right. And as I started the engine, the thought crossed my mind. “That isn’t right! This is Down syndrome awareness month. Autism already had its day in the spotlight.” I found myself feeling irritated. Conflicted. Guilty. None of those are in my top ten list of favorite feelings. 

And as I weaved home through the drizzle and late-afternoon traffic, my reaction started to make sense. It occurred to me that I was irked that autism was taking the spotlight from Down syndrome. It bothered me that the “spotlight” at the food market was on autism. But it also occurred to me that it was the same thing that appears to be happening in Los Angeles in general. Not only today, or October, but throughout the year.

Autism Speaks is doing a great job. And I’m thankful. My family benefits greatly from their awareness and education efforts. TACA (Talk About Curing Autism) is also very active, and has forged some incredible partnerships within the media and community in order to spread the word and ensure that autism is positioned front and center. These organizations, and several others, have fully embraced and cultivated an active presence in social media circles, public and media relations, and in general, are keeping autism front and center. Generating a buzz.

So when I heard at the market that Autism Speaks has forged a relationship to raise donations and awareness of autism for the month, I was jealous on behalf of myself (selfish, I know), my son (who, in reality, doesn’t understand these things and  wants only to be loved by those around him), and the Down syndrome community in one of the largest cities in the country. My mind was racing, toggling the signs of silence: The LA Down syndrome group Twitter account is effectively inactive, as is it’s Facebook page. The web site, should you know the address you’re looking for, is pedestrian, but does list several events and activities. There is a Buddy Walk scheduled, but I couldn’t tell you a date or location. The LA model is a bit different. All participants pay to walk, can purchase t-shirts at an additional fee, etc. So for a family to participate, it’s a large outlay.

I’ve been fortunate to connect through social media with some wonderful people around the world that are linked by a connection to Down syndrome. My Twitter feed hums with notices and recaps of wonderful experiences at Buddy Walks around the country, uniting communities in acceptance and advocacy for our kids and families. I see great things going on, but most of all, I see people connecting. And I’m left to wonder, “Why not here?”

And so, my first action of Down Syndrome Awareness month comes clear. I need to get involved. I don’t have all the answers. I may not have any. But I have a keyboard. And a phone. And a son, who 13 years ago came into our lives and made all the difference in the world. Teaching us to tune into life in a different way, and reminding us to celebrate every morning and milestone. Happy Hayden Awareness Month.

The Numbers Are Staggering

Posted April 16, 2011 by LeftCoastDad2Two
Categories: Asperger's Syndrome, Autism, Down syndrome

Tags: , , , , ,

I’m not a big fan of numbers. Never have been.

As a liberal arts major, math has always confused and confounded me. Professionally, I am in the field of marketing and public relations, where my view of numbers was forever shaped by an early mentor growling over a single malt in a smokey, midwestern press club, “Numbers never lie, my friend, but our job is to torture them until they tell us what we want to hear.”

This morning I read an Autism Awareness article BC (before coffee) by Todd Drezner that has stuck in my brain, shot through my body and refuses to give up its grip on both of my BC functioning brain cells. And it’s not the message, so much as the numbers, that are twisting me in knots.

The message is cool. Autism is hip. It’s hot. It’s now. I agree. My daughter is the coolest kid on the block. Not because she has autism, but because of who she is. I like hanging out with her.

I also think Down syndrome is hip and hot. My son is, as ESPN’s Stewart Scott would say, “Cooler than the other side of the pillow.” Not the extra chromosome, but my son. He is Carey Grant/Brad Pitt cool. His slightly mussed, surfer style hair, the way he saunters into a room. The way he communicates despite being largely non-verbal. (I, too, am largely non-verbal, but it only gets me in hot water with my wife.) He’s got a great sense of humor.

I totally agree with Drezner’s message. It’s the numbers that are killing me. I’ve heard them repeatedly over the years. Maybe today is the day I hit critical mass. As Drezner points out in his article, 9 of 10 women told they are carrying a child with Trisomy 21 (Down syndrome) elect to abort the pregnancy. Ninety percent.

But I believe the women are making decisions to abort based on bad, outdated information. Doctors are frequently brutal in their initial diagnosis for our kids. (They say they are just being graphicly real – not wanting to paint artificially rosy pictures. Yeah, thanks.)

Think about raising a child. Any child. There are no guarantees, never have been, no matter the genetic makeup. Yes, raising a child with Trisomy 21 is different, but completely do-able. As is raising a child on the autism spectrum. Yes, our son has come through several health-related issues. But he’s come through them, and taught me more about life while doing so than any other teacher I’ve ever had. To counsel a woman to abort due to a genetic anomoly is wrong on so many levels. In fact, the in-utero test could be used to give parents a “heads up”, a chance to research and plan, to get to know other parents who are already on the journey, in order to get ready for the ride.

I was born typical. So my mom didn’t get the warning that I would spend more years than not being selfish, self-absorbed, hurtful and bone-headed. My mother is a saint, but many (quite possibly 9 out of 10) would probably not choose to have gone through my darkest, self-created moments with me. Was I easier to parent than my son, or the nine other kids conceived at the same time as he that didn’t make it full term because of parental choice? The easy and honest answer is no.

I’m all for awareness. And it is with doctors and health care professionals that I want this newly expanding “awareness” to begin. Let’s address the attitudes of those in the health care industry, as well as the entitlement we as a people feel regarding our children (and babies). We, as a society, have come to a place where we believe we are entitled to “perfect” children. News flash…we’re not!

Drezner posits that autism is so generally accepted because it cannot be diagnosed before birth. Don’t get me wrong. I’m thrilled that awareness of autism is as general as it is. I believe my daughter is more generally understood now that she has a definitive label. But my deepest desire is that the national conversation be directed toward awareness and acceptance of all disabilities, regardless of age and specific label. It’s a conversation we can’t afford to ignore.

The numbers are overwhelming.

Aware of Autism

Posted April 8, 2011 by LeftCoastDad2Two
Categories: Asperger's Syndrome, Autism

Tags: , , ,

I skipped the traditional posting on Intergalactic Autism Awareness Day, not because I was taking a bold stand or that I was expecting my abstinence to create even the smallest of ripples across the cosmos. Like so much of my life, it was much simpler than that. I just didn’t know what to say. I still don’t. I’ve never known what to say. I just frequently don’t know how to untangle the joy, anger, guilt, sorrow, pride, love, defeat, success and confusion in order to share my thoughts in a manner that makes sense to anyone other than my wife (who after 20 years has perfected – and mostly accepted – the ability to interpret the various grunts and harumphs relative to the elevation of my eyebrows and make sense of what is going on inside my head).

I saw a tweet come across my Twitter feed that summed up my thoughts exactly. “Having a really hard time writing Autism Awareness Month post today. Feeling crapy (sic) & negative & not wanting to reflect that, but its what is.” Amen, sister.

My daughter is “on the spectrum.” We’ve known there were issues (over and above those which we knew of at birth), and we actually nailed the diagnosis by ourselves several years ago. My wife is an information data-mining machine. She had taken comments from various OT’s and PT’s regarding our daughter, and through exhaustive searches and countless conversations with other parents within the disability community, come to the conclusion that maybe we were looking at something on the autism spectrum, possibly Asperger’s Syndrome. We soon had a printout of characteristics and behaviors associated with Asperger’s from Johns Hopkins. Most of the descriptions fit our daughter to a “T”.

It is just over the past couple of years that we had the “experts” diagnose her. The first was an expensive neuro-specialist that handed us the exact same printout (from Johns Hopkins), saying, “Based on what you are telling me, I would suggest she may have Asperger’s.” Thanks, pal.

Most recently, the UCLA Center for Autism Research and Therapy conducted an evaluation over several hours, and confirmed the diagnosis.

I would rather write about anything other than autism “awareness” today.

Like maybe this year’s Redsox opening the season 0-6. Sure, they’re finding new and inventive ways to give games away, but hey, there are still 156 more regular season games to go, and obviously they’re just getting warmed up to lay waste to the other teams in the American League East. I love baseball because there is always tomorrow.

Like maybe the weather. It was sunny and mid-80’s in our burg-by-the-sea today. A perfect day to slip down the street to the beach and stretch out in the sand, with the methodic pounding of the surf as a soundtrack to pelicans diving for their dinner and porpoises occasionally breaking the surface for a breath of air on their journey to wherever it is that they go.

Or maybe even about our big black dog. The Newfoundland is bitter because I made her stay out on the shaded patio all afternoon. You can just see in her eyes that she’d unleash a “thank-god-mom-is-home-from-the-beach-to-let-me-in-the-house-to-sprawl-across-the-floor-in-my-favorite-napping-place” barrage if only she could speak “human.”

Any trivial subject would suffice. Any subject. But not autism “awareness”.

I’m keenly aware of it. So is my wife. It has been blasting through our lives for the past 11 years.

I’m aware of it and I feel differently about it at different times of the day. I feel every emotion known to mankind about autism on nearly every single day of every single week.

I’m certainly still in the grief cycle, still angry for how it manifests in my beautiful, wonderful daughter. There are other issues she faces, but autism is the driver of the train. I despise the trantrums, the raging that has torn at our family fiber over the years. Clinging to each other by our fingernails as OT’s and PT’s suggested remediation techniques, always followed by my daughter dissolving into yet another meltdown after returning home.

I’m pretty sure the people around us are “aware” that our family is different. We’re the ones with the kiddo with no impulse control, the one that addresses all beings as equal (regardless of age, stature or relation). The small child with the gargantuan vocabulary and encyclopedic interest in Meerkats (or Star Wars, or whatever the object of interest is this particular year).

People are aware we don’t go many places as a family because the sensory stimulation of a trip to the grocery store sets in motion the internal chaos within our daughter that more often than not ends in a screaming, wailing eruption. Church? The same.

Yet I love the times of sanity, when she lets us in. The smiles, the times she will slip her hand into mine as we walk down the street. Watching her play with her brother in the back yard, helping him any way that she can. I love the bedtime routine. Tucking her in every night. Watching her expertly comb a beach, in search of shells, crabs, and any other creature inhabiting the surf zone, tidepools or sand. She loves to do so many things.

Mostly, she’s my daughter, a beautiful little girl, who happens to have the label of autism. I love her. As I learn to support her as best I can. To help her through each day. To help us through each day.

And through it all, I need to be more aware of my daughter’s needs, hopes and dreams. I’d like our families and friends to be more aware that we’re doing the best we can to support and nurture our family, and frequently there isn’t much left in the tank to devote to friendships and extended family. I’d like healthcare professionals to be aware that we need concrete tactics explained in simple english to help my daughter. I’d like the regional center to be aware that supports and services are desperately needed for kids with Asperger’s. I’d like the regional center case worker to be aware that we need her to do her job, because even though we look like we have it together, I want to be sure we’re exploring all the options.

And most of all? I want our daughter to be aware that we love her. Because we do.